ed note: I’m departing from my usual song title today to share a poem written by my oldest. He didn’t write it for Autism Acceptance Day. But it’s a perfect poem for it. And I’m incredibly proud of him – not just for writing it, but for believing it and believing in his brothers and the members of their autistic village.

The Tiger Cub by Gerry* Butler (age 12)

Long ago, a baby tiger was born,
And he could not speak
As smart as he was,
His future seemed bleak
He was as smart as can be,
And witty and kind
But all the other animals
Would not share their time
“You’re not as good as us!” they said,
“You never will be!”
But in his head the tiger thought,
“I believe in me”
One day at school,
When he finally learned to read and to write,
He wrote down his thoughts and his teacher exclaimed,
“My Goodness, this tiger is bright!”
And all through the kingdom,
And all through the land,
He was known as,
The Tiger Who Can

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It was about 8:45am and I was leaving for work. Gerry was in the car with me.

We only had a couple of inches of snow fall the night before which in the grand scheme of all things winter wasn’t a lot. Tim had shoveled the driveway at midnight so it was clear.

The plows, however, had come through early that morning and created a crusty, slushy pile about three inches tall right along the edge of the driveway.

Just the perfect consistency for me to get my car stuck.

I haven’t been stuck in snow in my car in years. I grew up in Vermont. I got my driver’s license in the dead of winter and have been in every possible bad weather driving environment. The last time I was stuck was high school maybe? College?

I rocked the car back and forth to get it free, shifting to reverse and first gear like I was taught. Still stuck. I got out and shoveled around the tires and tried again. My tires sank deeper into the muck of sand, snow and ice.

I got out of the car and went into the house. I was choking back tears at this point.

“I’m stuck,” I said to Tim. “I need your help.”

Tim came out and shoveled around the car. He did the shifting gears thing to rock the car and shoveled some more. The wheels spun and finally broke through. I hopped back into the car and with Tim out in the road giving me the all clear, I pulled out from between the seven foot snowbanks that line our driveway and sped off to work.

“Are you okay, Mom?” Gerry asked.

“Yes,” my voice breaking a bit. “I’m just running late now.”

“You know this is the first winter when I’m really tired of it,” Gerry said. “This is a lot to deal with.”

“It sure is, kiddo. I’m done too.”

I’ve lived in New England my whole life and I have never experienced a winter like this. I’ve spent the last four weeks watching my mailbox disappear. My view of our road out our bay window is now obstructed by snowbank taller than Rob Gronkowski. My usual “hey it’s winter we will make it through” attitude has been replaced with anxiety, claustrophobia and complete weariness over what will come next.

At first it was ok. Fun even. A blizzard! How exciting. We watched the weather forecasts and marveled over the drops in pressure. My human barometer ran laps inside the house as I watched the snow maps for our area change color to show a potential two feet of snow coming our way. We stuck a yardstick in the snow to see how much we would get. I baked cinnamon rolls for breakfast. We watched movies and did crafts.

And then one snow day turned into two. Back to back and one week after the next. The forecast showed no break. Every storm was hitting us and we were in the target snow zone. The storms came one right after the other. The storms had non-threatening names like “Juno” and “Linus” but they came charged with high winds, snow, and freezing temperatures. Jim Cantore came to visit.

With each forecast, my winter spirit broke.

Anxiety kicked in for my kids. They would sit by the window and ask if school would be cancelled. Will we have a delay? Will they close? Is it safe for Dad to go to work? Will we lose power? If we lose power, will the fish die? When will they make the call?

The questions would come in rapid fire. Until every phone would ring and the texts would come in that yes, school was closed for the day. Again.

Before it sounds like I’m a parent who doesn’t enjoy being with my kids, these school closings aren’t just about the kids not being in school. We’ve had delayed, rescheduled, and delayed again IEP meetings. When Howie and Lewis aren’t in school, they are missing those services that we’ve so carefully crafted and fought for in those IEPs. If my kid happens to have lunch bunch or his social skills group on a Monday, he’s missed it four times. Their curriculum and routine is broken. Lesson plans are thrown out the window. Our home services have been cancelled. I rely on those plans to help my kids navigate their world and help me at home to work with my kids.

Is this life and death? Not for us specifically but for so many it could be. The worry and fear is real. Tim spent seven hours clearing our roofs from snow to prevent a roof collapse. I have friends with buckets in their kitchens, bathrooms, and playrooms as ice dams have created leaks all through their house. At night, the house “pops” from frost quakes. There are power outages and dangerous driving conditions. My tiny small nonprofit business has had to close five times because of the weather. We are dependent on that revenue from families visiting our sensory gym to stay open.

I haven’t slept through the night since the Patriots won the Super Bowl. Between the wind and the noises inside and outside the house and the “how am I going to make it through another snow day” anxiety inside my brain, there’s little calm to be had in my head. This is the first year I have actively researched schools and programs and real estate in Arizona.

Since this happens quite frequently, I have a mental list of “conversation” topics that usually redirect everyone long enough to get some food into them in between sentences.

When I say “conversation”, I mean mostly monologues of non-related topics, but each kid is taking a turn with it, allowing the others to eat.

And when I say “topics”, I mean I ask them about Minecraft. So just one topic. Singular.

Tonight was no exception.

I entered the cook time into the microwave and turned towards the boys at the table. “So, guys, if you could create your own Minecraft Mod, what would you do?”

(ed note: a mod is a modification made to the Minecraft code. Gamers write code to create these mods to add additional things to the original game. My friend Bec at Minemum can explain it all. I know nothing about it except that my kids are obsessed with watching videos about them and begging me to download them.)

“I would create a space world where things could explode!” replied Howie.

“I would create a place where animals could go and there would be explosions!” said Lewis.

I took my dinner out of the microwave and sat down at the table.

“Well,” I said, “if I was creating a mod, I would make a sensory gym mod.”

I gave Tim a little smile. I was completely kidding. I half expected them to come out with a “What?! That’s ridiculous!” and go back to discussing how to explode creepers and zombies.

“We would call it The SenseAbility Craft Mod!” said Howie. “We could craft a trampoline out of leather and and blocks. And it would be bouncy like slime. You’d make it on the crafting table!”

“And you could make a bolster swing too, ” said Lewis. “You would need string. And something to sit on.”

I sat in stunned silence.

Howie’s eyes got huge and bright.

“And the villagers – they would be autistic villagers! They would be the ones who could be in the SenseAbility mod.”

Tim and I made eye contact. I gave him the “wow” look with my face.

“It would spawn autistic villagers and they would be the only ones in the village. And they would go up to each other and would make the villager sounds and understand each other.” Howie was on a roll and was not stopping. “And they would go on the trampoline and the swing.”

“Could you craft a weighted blanket?” asked Tim.

“Oh yes, you could do that.” Howie replied.

We were all giggling a little at the ideas, throwing them out one by one.

“You could make a square ball pit with blocks and craft something to put in it!” Lewis exclaimed.

“Could you make a wooden slide?” Tim asked

“YES!” Howie yelled. “You could make a slide.”

“You would need some fidgets too in your inventory,” I said to Howie, “just in case the villagers needed them.”

“Yes,” he said. “And the autistic villagers could trade emeralds for fidgets so they could feel better.”

He looked at me. “Spawning an autistic villager is rare but special, you know.”

I smiled at him. “Yeah buddy, I know.”

Howie got up from the table. “Let’s play ‘SenseAbility Craft’ right now!”

“Wait, what? Right now? You didn’t eat anything!”

But Howie was already gone and Lewis followed right behind. They went into the other room and pretended to be the autistic villagers, happily trading for fidgets.

I cleaned up their full plates of food and turned to Tim.

“You better start those Java and coding lessons with Howie. I think he’s on to something.”

**********

It was December 2009 when I was listening to the developmental pediatrician list off the “red flags” for autism that she saw in Howie. No pretend play, no ability to think of objects as anything other than their literal use. Focused on the spinning wheels of the car and not the car itself. Can’t do a pretend birthday party.

It was August of 2011 when I heard the same thing for Lewis.

“You’ll need lots of work and therapy to develop those skills. I’m not saying he won’t ever have them, but they won’t come naturally.”

I left the office each time with my view of the world and my boys tipped on its side. I was crushed – mostly by the guilt of what I didn’t see. What could I do to help him? Could I help him?

Turns out my autistic villagers just needed to figure it out in their own time and their own way, through a game that has no boundaries except the limits of their imagination and creativity.

Which, despite what we were told, seems to be endless.

I’m looking forward to the day when they create this SenseAbility Craft Mod. I hope they let me play and be a part of their incredible, creative and imaginative world.

When I was a kid, I used to have these semi-religious, existential conversations with my dad about fate, free will, superstition and destiny. I would say I believed in fate, that some things were just meant to happen and meant to be.
He would use his “frog in the pond” story on me, asking me if he told me that there was a frog in the pond who controlled everything in the world, would I believe it. I would always answer “of course not”. Which led to discussions of science versus fate, proof versus belief.

Tonight, as the bases were loaded and I went back upstairs to my spot and put on my 2004 series winning pants and the inning ended, I would like the thank the frog in the pond for helping the Red Sox out of a jam.

– My personal Facebook status during last year’s Red Sox World Series run

I’ve always been a superstitious person. I grew up believing in many of Jewish superstitions shared by my grandmothers. I remember how adamant they were that my mother not attend my grandfather’s funeral when she was pregnant with my sister. I remember a lot of “pooh-poohing” and spitting from my older relatives when I was a child. Even now, I have a small “Raggedy Ann” doll in the back of my car that has been in the storage compartment of every single car I’ve owned because I believe it keeps me safe. I have certain “lucky socks”, pants that I pull out for Red Sox World Series games, and I never drive on long trips wearing anything other than sneakers.

When I was pregnant with my boys, I never had a baby shower and I dutifully tied a red ribbon on the leg of the crib for all of my children, whether they actually slept there or not. And I never, ever opened an umbrella in the house. Ever. Rationally I know that these superstitions aren’t based in any fact or science. However, why tempt the evil eye?

When I became a parent, my belief in the need to “do things in this order or else something bad could happen” continued. If Gerry would fall asleep in the car wearing a certain coat, I would make sure he had that coat on each time I needed him to sleep in the car until it was no longer appropriate seasonally. I would cook his oatmeal for the same exact amount of time each morning before daycare. I would follow things in certain patterns to make sure the same result would happen. Most of this was probably sleep deprived induced behavior and not true superstitions, but I believed that I had to do some things in a certain way to make sure I got the same end result.

Then came Howie and my superstitions kicked into high gear. Almost from day one.

He had certain clothes that he would be happy in and if he wore anything else, he would squirm and scream and cry.

I had to mix his formula a particular way or he wouldn’t drink it. And he had to nurse from side to side in a certain pattern or he wouldn’t fall asleep.

He could only fall asleep on me, no one else. If anyone else tried, he wouldn’t sleep for the rest of the day.

He had to be touching my skin to fall asleep.

He had to sit in a certain place at the table or he wouldn’t eat.

I had to give him a green plate.

We had to watch one episode of “The Backyardigans” before bed. And then he would sleep in my bed so when he woke up every 45 minutes, he had me there to help him get back to sleep.

I had to put socks on him at night or else he wouldn’t sleep. Until that “wore off” and we went without socks. Or he needed to wear certain pajama pants to bed. And then we moved to no pajama pants at all.

He couldn’t wear any other pants but cotton ones with no buttons to school or else he wouldn’t have a “good” day.

I had to give him his melatonin right before the shower, not sooner or later. Brush his teeth after the shower, not before.

We had to snuggle in a certain way before bed or else he would be up all night.

I had to warm up his yogurt smoothie in the morning for exactly 30 seconds in the microwave or he wouldn’t drink it.

Then came the autism diagnosis for him.

And for me a better understanding of the comforts of routines and the unsettling nature of triggers.

These superstitions were my own creation based on his responses to his sensory needs – the patterns of “we must do this or else” were a reaction to what I didn’t understand.

I didn’t know or understand why he needed socks worn a certain way, or why he could only drink a warm smoothie, or wear pants that were so tight they made a mark on his skin. I feared changing up the color of plates because I feared the meltdown that would come. I believed there was “some magic” in giving him the melatonin at a certain time and I thought that if we didn’t snuggle in “just this way”, all hell would break loose and we’d never sleep again.

But I get it now.

I know that he needs to feel comfortable in his clothes in order to get through the day at school or sleep at night. I know now that the warm yogurt is a sensory aversion to anything too cold to drink. I understand the comfort in sitting in the same seat at the table for dinner.

These aren’t superstitions. These are genuine responses to known sensory triggers.

With that knowledge also comes the ability to move from the rigidity of the patterns. After years of practice and tiny changes, we can serve food on different colored plates. “The Backyardigans” is no longer the show of choice before bed. He’s falling asleep in his own bed with me at the end of the bed, not tangled up snuggling in it.

We no longer practice from a place of ignorance or fear, but one of understanding, acceptance, and the belief that these sensory issues are real and the routines are necessary for comfort and calm.

There are times when I still catch myself falling into the superstition pattern. Last night, Howie put his pajamas in a different order than usual, with his tight bike shorts on over the tight compression pants that he wears to bed.

I panicked for a moment, almost telling him that he will never sleep if his clothes are out of order because he has slept so well three nights in a row so changing it up would be disastrous.

Instead, I reminded him that with the smaller bike shorts underneath the compression pants, he will feel a tighter “hug” on his legs which will help him sleep better.

He smiled, changed his clothes, and climbed back under the covers.

I’m working really hard to recognize the appropriate cause and effect to help my kids understand these their triggers and needs.

However don’t expect to see me opening any umbrellas inside anytime soon. And my “Raggedy Ann” doll will always be with me.

Chilling out in the compression pants and the Yogibo.

“Very superstitious, writings on the wall, Very superstitious, ladders bout’ to fall, Thirteen month old baby, broke the lookin’ glass Seven years of bad luck, the good things in your past

When you believe in things that you don’t understand, Then you suffer, Superstition ain’t the way ” – Superstition by Stevie Wonder

We are sitting in Lewis’ kindergarten transition IEP meeting. As a team we are reviewing every service and service delivery to make sure it fits right for Lewis as he leaves preschool. It’s not my first rodeo and I have plenty of anxiety over the whole transition process based on past experience. Lewis’ incredible preschool teacher and team know this – and know Lewis – and we discuss every detail to make sure we are all on board and understand how kindergarten will look for him for the new school year.

We discuss his social skills programming, his need for visual and written cues when transitioning, his extended school year plan, and all the supports he will need for success.

“So now let’s talk transportation,” says his teacher.

I sit up straight in my chair, stiffening a little.

“I know this is something that we’ve talked about in the past. But we don’t really feel like he needs specialized transportation. I really think he will be okay on the big bus.” His teacher stops talking for a moment. “Um, you don’t agree?”

Tim elbows me.

“You’re pulling on your sleeves,” he says.

That’s my “tell”. My sign that I’m having an anxiety attack.

“It’s not that I don’t think he can’t be on the big bus. It’s just that…” I take a breath.

“It’s just that I don’t know how I’m going to manage all three kids getting to school at different times with different modes of transportation.”

“I’ve officially lost my ability to write,” I texted. “I’m trying to write about how Lewis taking the bus and me driving Howie is an example of not just our acceptance of what each kid needs but an understanding of those needs….None of the kids asked why one was going to school one way and one another…we’ve taught them that everyone is different with no stigmas attached. But the words aren’t coming without sounding stupid…”

And she gave me brilliant advice like she always does: “Start in the middle. Where the feelings are. Don’t try to start at the beginning.”

The big bus would have seemed like “The Holy Grail” of transportation. Going to school the way most kids do. Getting that big “first day of school” bus picture. I would have looked at it as one of my kids can ride the bus and one of them…can’t. My anxiety in that meeting would have focused on their disabilities in the negative, the kind of deficit model of looking at challenges and accommodations as a something bad and temporary with the hopes that maybe someday things will get better. I would have focused on the fact that I had one kid whose challenges kept him off the big bus, while both his big brother and little brother were able to ride it.

But here’s the thing. I’m not that me anymore.

Last school year, we took Howie off of the mini bus. He had been riding the mini-bus since kindergarten to and from school and it’s written into his IEP that he needs specialized transportation. But for second grade, I started driving him to school and he would taking the mini bus home. He needed a “sensory overload free” way to enter school in order to start his day off right. He didn’t want to talk to anyone or have anyone talk to him. About halfway through the year, that need for a sensory overload free trip became evident for the ride home as well. He would be able to use his calming tools to get through the school day, but have a very difficult time with that on the way home.

Once I began driving him both ways, his stress level leaving the house and coming home lessened greatly, spilling over to a better day at school and at home in the afternoon.

It wasn’t that he couldn’t take the mini bus. Or even the big bus.

It was that both of those choices weren’t right for him. For his success – academically and emotionally – he needed me to drive. This accommodation was no different than any of the other supports listed in his IEP.

Two kids – two brothers – with the same autism diagnosis. Needing two completely different accommodations.

But changing the question from “Can my kids do something” to asking “what is appropriate for them” – it made all the difference.

**********

May 2014

“So what do you think? Do you think Lewis can take the bus to kindergarten?”

All eyes of the team are on me.

“I know that with a lot of prep he can. I think we should give it a try,” I say.

“Are you worried that Howie will be upset or jealous that Lewis is on the big bus?”

I smile. “No, actually, I’m more worried that Lewis will wonder why he doesn’t ride with Mom to school.” I say. “Buthe will know that’s just how he gets to kindergarten. And Howie will know that too.”

I sigh.

“It’s the logistics that make me nervous. Gerry’s bus to the junior high comes at one time, the elementary school bus at another. And somewhere in there I need to drive Howie to the elementary school too. But we will figure it out. We always do.”

I shift in my seat, pulling at my sleeves.

“Can we talk again about the fact that my last kid is leaving this amazing preschool for kindergarten? I’m not so sure how I feel about that…”

**********

We talk a lot in our house about fair not meaning equal. My kids have seen the cartoon of three characters of all different heights looking over a fence. They each have different sized boxes to stand on so they can see over the fence line. They aren’t equal sized boxes. Each character needed something different to get them to the same place.

We’ve never said “I hope someday you can take the big bus to school.”

In our town, some kids walk. Some arrive in cars. Some take the big bus. Some take the mini bus.

There’s no better or worse way to get to school. For my boys, there’s no stigma attached to any mode of transportation.

Howie was on the floor of his room. He was wrapped up in a towel, drying off from the shower.

“Mom. Do I look in sorts?”

“I don’t know. Not really I guess. Maybe a little? Are you?”

“No,” he responded. “I’m a little out of sorts.”

“I could tell. You think it’s because you’re not feeling well?” He had been battling a mystery fever for the past two days. No other symptoms, just a low grade fever.

“No. Not that.” He was looking up – not at my face but just passed me.

I stood over him as he stayed cocooned up on the floor.

“Why do you think you’re out of sorts?”

“Sensory overload,” he replied. His eyes shifted and immediately connected with mine.

“Really. What overloaded you?”

He sighed.

“Life.”

Howie paused for a moment.

“Sometimes that just happens,” he said. “I need a fidget. Like something rubber. Or a ball.”

He said it in a very quiet, almost nasally voice. It’s the voice I recognize when he’s uncomfortable.

I looked around quickly in his room.

“I found a small Minecraft Creeper figure. Will this do?”

“Yeah.”

He took it from me and smiled.

I took a quick picture of him on the floor with the creeper and showed him his happy face. He stayed on the floor for a few minutes, rubbing his hands over the figure and squeezing it.

I left the room to help Lewis into the shower. When I returned, he was dressed in his pajamas and in bed.

“Can I share the picture I took of you with the creeper to show people how you look when you’re back in sorts?”

He snuggled under the covers and grabbed his weighted stuffed animal.

“No,” he said. “Don’t share it. Can I have a Mom squish?”

I leaned over and squished him tight. Part of his self-advocacy has to be the right of refusal of what I share and what I don’t.

“I won’t share it. I promise. I love you.”

I took my position at the end of his bed. He slid his legs under mine and fell asleep.

**********

I could write about the sheer enormity of that conversation and what it means for him, for me, and for the people in his world. About how much hard work he has done with his teachers and therapists to get here – to not only understand his body but express it in a way that we could understand. I could write about all the signs I missed during the day today that could have told me what he so eloquently did tonight and even though I preach “behavior is communication”, I ignored it all.

I could write that.

But right now I am just listening to him sleep. Soft, even breaths.

The ones that I now recognize come when he’s back “in sorts”.

And I’m just going to stay here a while.

A photo from a different wrapped in a towel day. One that I’ve had permission to share in the past.

“ Walk with me the diamond road
Tell me every story told
Give me something of your soul
That I can hold onto
I want to wake up to the sound of waves
Crashing on a brand new day
Keep the memory of your face
But wipe the pain away” – Diamond Road by Sheryl Crow

Because you understand that the aggressions are not personal but part of the fight or flight overload of the day.

Because you wake up after those tough days ready to teach again.

Because you celebrate his successes and stay up at night figuring out how to help him the next day.

Because you believe in progress not perfection.

Because you do cartwheels in the halls and make collages of every single picture you’ve taken of him.

Because you request to be my child’s aide and teacher next year.

Because you love him.

Because you taught him to love himself. And believe in himself.

To Mrs. M and Mrs. C and Mrs. S at the elementary school and Mrs. M at the preschool…

You. You are the heroes.

And for that, I am forever grateful.

“And then a hero comes along With the strength to carry on And you cast your fears aside And you know you can survive So when you feel like hope is gone Look inside you and be strong And you’ll finally see the truth That a hero lies in you.” – Hero by Mariah Carey